Like Davina, I had surgery for a benign brain tumour and it changed me forever

Claire Bullimore was in her twenties when she was diagnosed with a benign brain tumour that required surgery. Now 41, Claire runs the Aunty M Brain Tumours Talk Show podcast and lives in Croydon with husband Ioannis, 37, an airport worker at Gatwick. Here, she shares how the news impacted her life...

When I heard the news about Davina McCall being diagnosed with a benign brain tumour, my heart went out to her. I’m sure she’ll be really scared right now, wondering how it will affect her life, whether she will still be able to do the job she clearly loves and be the same mother and partner she always was. I really hope her story will be one of the 'good ones'.

I was 25 when it happened to me. Until that point, I thought I was completely healthy, although afterwards I realised I’d probably had symptoms for three to four years. I was living a great life, working in the City for an oil and gas company, earning good money and going out with friends, having fun dating and travelling.

But one day, heading into work, I fainted on the train. I woke up with someone leaning over me, asking, "Are you ok?"

Passengers helped me off the train and I called my mum, Eileen, who drove straight over and took me to the GP. I’d been having headaches for several months and the doctors had previously said they were down to hormones, periods or even low iron. This time I was told it was due to stress.

Over the next few weeks, the fainting and headaches were intensely painful, like whacking my head against concrete. The pain was right in the middle of my head and I was constantly taking painkillers. It got to the point where I couldn’t take the pain anymore. I decided to go to the GP. But while driving, my vision went completely black for a second – as if I was blinking – but my eyes didn’t close. It was really weird.

My first thought was that I’d damaged my eyes by going on a sunbed recently. So, instead of going to the GP, I visited the nearby optician. There, two opticians examined me and agreed that there was a lot of pressure behind my eyes. They said I should go to A&E to get it checked out. They were even going to call the hospital so they could tell them what they thought it was – but they didn’t tell me. By now, I was really scared but still had no idea it would turn out to be a brain tumour. Again, I convinced myself it was something to do with sunbeds.

My parents were in Australia visiting my brother so I called a friend who lived nearby and asked if he could meet me at the hospital. Together, we sat for around six hours while the doctors did tests but they couldn’t work out what the problem was and told me to go home, then return in the morning. I was so confused but called my parents to tell them not to be worried.

The next morning, I had more tests. The doctors suspected I had fluid leaking from my spine into my brain and wanted me to have an MRI scan and then go home, but as I was walking out of the hospital, a nurse chased after me and said, "Miss Bullimore, we’d like you to speak to someone." By now, I was really worried.

Eventually, a consultant said the words that would change my life forever: "This scan shows your tumour." I couldn’t believe what I was hearing and had to ask him to repeat it.

Like Davina, my kind of benign tumour – called an 'intraventriculor meningioma' – was also rare, accounting for only around 2% of people suffering from meningiomas. I totally zoned out. I really don’t remember how I reacted but do remember thinking, 'I’m going to die. How am I going to tell my parents?' The consultant said I needed to be admitted into the hospital that night for surgery in a couple of days.

It's strange what you say in these moments and my response was to say that I had to go home and clean up, lock the doors properly and pack. The doctor agreed I leave the hospital if I came back that night for more tests.

At home, I put the bins out, tidied up and packed for the hospital, wondering whether I’d be returning home at all and might die during surgery. I even went for a Chinese with my friend, not knowing if it would be my last meal out.

I had to wake up my parents in the middle of the night in Australia with the words, "I don’t want to worry you, but I’ve got to have surgery tomorrow." They told me they would fly home the next day. I was absolutely petrified. I do have a faith and was holding onto that as much I could, but I really thought I was going to die, go to heaven and would never know life beyond 25. It made me so sad.

I returned to the hospital around 11pm that night and spent the following day in the ward, with more waiting. Thankfully, my aunt came over to help me talk to the doctors. Apparently, I was told there could be complications with the surgery, that my speech, vision and movement could be affected. I don’t remember that.

With only minutes to go before I was taken into theatre, my parents ran through the door and we hugged and kissed. I had been holding it together emotionally, but when I saw them I burst into tears. I didn’t say it out loud but the thought going through my mind was, 'Am I leaving them now?'

There were several complications in my surgery. I had quite a lot of hydrocephalus (fluid on the brain). The tumour was 10cm in diameter and had been pushing the backs of my eyes, which is what had been causing the pain and the black outs. Thankfully, they managed to remove it.

But in the brain tumour community there is a saying: 'Benign isn’t fine'. When I woke up from surgery, it was clear I had other issues. Although the headaches had disappeared and I could recognise my mum and dad at the side of my bed, I couldn’t articulate who they were. In fact, it took a good six months of speech therapy to be able to say anything properly. My speech is still affected now although I’m able to form sentences clearly, sometimes I struggle to think of the word I need.

I had a big scar from forehead and to my neck. Even now, if it’s cold, my scar tingles. Worst than that, I started having seizures. I had to stay in hospital for a further 17 days until they got those seizures under control with medication.

Today, almost two decades on, my life has changed in ways I never thought possible. Initially, it ruined my life at the beginning. Watching friends fall in love, get married and have children was very upsetting because I realised that was probably never going to happen for me. I would be so terrified of having a seizure in front of people that for a long time I simply refused to leave the house. I sat at home with my parents watching my life go by. I had to have a lot of therapy for the anxiety.

But I have tried to turn this into a positive. My surgery was in 2008 and by 2011, I was writing a blog about living with a brain tumour and even doing a local radio show with my mum to help build a community for people with brain tumours. At first, I used a pseudonym – Aunty M – because I didn’t want people to know it was me. I felt I’d failed at life somehow. Today, I’m much more confident about being open about my diagnosis and my life because I think it’s helpful for other people to hear about it.

I met Ioannis four years ago via a dating app and we married a couple of years ago. He has mild cerebral palsy so has a lot of empathy for my situation and that’s why we connected. Sadly, the medication I am on means that it would be difficult for me to have children.

In another really sad twist, I lost my mum who developed cancer and it went to her brain. It was really strange to be able to be on the other side, helping her understand what was happening to her and the treatment she was having. I miss her so much.

Davina may have a long journey ahead but it sounds like her surgery went well and she seems to be recovering. She’s very healthy and that will work well in her favour. The patients I know who are active tend to be able to move on more quickly. I truly hope she’s one of the successful stories.

Read more on brain tumours:

• What we know as Davina McCall makes 'enormous' progress after brain tumour surgery (Yahoo News UK, 4-min read)

• The unusual sign that led to my daughter's brain tumour diagnosis (Yahoo Life UK, 4-min read)

• I'm 16 and a brain tumour has left me with insomnia and stunted growth (Yahoo Life UK, 9-min read)